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Patient engagement

Lynn W Bush, Louis E Bartoshesky, Karen L David, Benjamin Wilfond, Janet L Williams, Ingrid A Holm
Disclaimer: This article is designed primarily as an educational resource for medical geneticists and other health care providers to help them provide quality patient care. Adherence to the information contained in this article does not necessarily assure a successful medical outcome. This information and any associated recommendations should not be considered inclusive of all proper procedures and tests or exclusive of other procedures and tests that are reasonably directed to obtaining the same results. In determining the propriety of any specific procedure or test, each provider should apply his or her own professional judgment to the specific clinical circumstances presented by the individual patient...
March 22, 2018: Genetics in Medicine: Official Journal of the American College of Medical Genetics
Jaein Seo, B Douglas Smith, Elihu Estey, Ernest Voyard, Bernadette O' Donoghue, John F P Bridges
OBJECTIVE: Acute myeloid leukemia (AML) is a progressive blood cancer with few effective treatment options. As part of a patient-focused drug development (PFDD) initiative led by the Leukemia and Lymphoma Society (LLS), we sought to use a community-centered approach to develop and pilot an instrument to measure patient preferences for the benefits and risks of treating AML. METHODS: Instrument development was informed by a literature review, engagement with expert stakeholders (n = 12), engagement with community stakeholders, and pretesting...
March 22, 2018: Current Medical Research and Opinion
Jennifer Oates
AIM: The aim of this article is to present selected findings from a doctoral study on the subjective well-being and subjective experience of mental health problems in UK mental health nurses. Here the concept of 'nurses' well-being' is explored. METHOD: Data were drawn from a survey of 237 mental health nurses about their mental health and well-being and from interviews with 27 mental health nurses with personal experience of mental health problems and high subjective well-being...
March 22, 2018: Nursing Management (Harrow)
Anna Maria Grugnetti, Cristina Arrigoni, Maria Antonietta Fusco, Arianna Magon, Adele Sgarella, Maria Luisa Gallotti, Giuseppina Grugnetti, Rosario Caruso
Distress could be often experienced by breast cancer patients with chemotherapy-induced alopecia. Those distress assessment is strategic to deliver care in a tailored way, enhancing the overall wellbeing. So far, those distress is measurable by the Chemotherapy-induced Alopecia Distress Scale (CADS), which is not yet available in Italian, due to there are no validation studies on this topic. For this reason, the aim of this study was to validate and adapt Chemotherapy-induced Alopecia Distress Scale within the Italian context (I-CADS)...
March 2018: Recenti Progressi in Medicina
Anne G Pereira, Michael Kim, Marcus Seywerd, Brooke Nesbitt, Michael B Pitt
BACKGROUND: Use of the electronic health record (EHR) is widespread in academic medical centers, and hands-on EHR experience in medical school is essential for new residents to be able to meaningfully contribute to patient care. As system-specific EHR training is not portable across institutions-even when the same EHR platform is used-students rotating across health systems are often required to spend time away from clinical training to complete each system's, often duplicative, EHR training regardless of their competency within the EHR...
January 2018: Applied Clinical Informatics
Jed D Gonzalo, Deanna Graaf, Amarpreet Ahluwalia, Dan R Wolpaw, Britta M Thompson
After emphasizing biomedical and clinical sciences for over a century, US medical schools are expanding experiential roles that allow students to learn about health care delivery while also adding value to patient care. After developing a program where all 1st-year medical students are integrated into interprofessional care teams to contribute to patient care, authors use a diffusion of innovations framework to explore and identify barriers, facilitators, and best practices for implementing value-added clinical systems learning roles...
March 21, 2018: Advances in Health Sciences Education: Theory and Practice
Hayden B Bosworth, Barbara Ngouyombo, Jan Liska, Leah L Zullig, Caroline Atlani, Anne C Beal
Lipid-lowering medications have been shown to be efficacious, but adherence is suboptimal. This is a narrative, perspective review of recently published literature in the field of medication adherence research for lipid-lowering medications. We provide an overview of the impact of suboptimal adherence and use a World Health Organization framework (patient, condition, therapy, socioeconomic, and health system-related systems) to discuss factors that influence hyperlipidemia treatment adherence. Further, the review involves an evaluation of intervention strategies to increase hyperlipidemia treatment adherence with a special focus on mHealth interventions, patient reminders on packaging labels, nurse- and pharmacist-led interventions, and health teams...
2018: Patient Preference and Adherence
Lindsay A Thompson, Rebeccah Mercado, Thomas Martinko, Ratna Acharya
BACKGROUND: While adolescents can receive confidential health care without parental or guardian notification, they are rarely asked about their experiences and opinions regarding their care because participation in research often requires parental consent. Anonymous research with adolescents via confidential patient portals may ameliorate this research gap. OBJECTIVE: Because use of a confidential online adolescent patient portal is high at our academic institution, we hypothesized that adolescents would also respond to survey-based research via the portal, especially if asked anonymously and without parental consent...
March 21, 2018: Journal of Medical Internet Research
Sobia Khan, Ashley Vandermorris, John Shepherd, James W Begun, Holly Jordan Lanham, Mary Uhl-Bien, Whitney Berta
BACKGROUND: Complexity thinking is increasingly being embraced in healthcare, which is often described as a complex adaptive system (CAS). Applying CAS to healthcare as an explanatory model for understanding the nature of the system, and to stimulate changes and transformations within the system, is valuable. MAIN TEXT: A seminar series on systems and complexity thinking hosted at the University of Toronto in 2016 offered a number of insights on applications of CAS perspectives to healthcare that we explore here...
March 21, 2018: BMC Health Services Research
Kerri Bell, Eugene Warnick, Kristen Nicholson, Sarah Ulcoq, Seong Jin Kim, Gregory D Schroeder, Alexander Vaccaro
Health care increasingly collects patient-reported outcomes (PROs) via web-based platforms. The purpose of this study was to evaluate how patient age influences portal engagement. Patients undergoing elective surgery at a single multispecialty orthopedic practice from September 2014 to February 2017 had access to an online portal to complete PROs, message the clinic, and view physical therapy instructions. A mobile app was optionally available. Age, sex, log-in frequency, PRO completion rates, and number of messages sent were reviewed retrospectively...
March 1, 2018: American Journal of Medical Quality: the Official Journal of the American College of Medical Quality
Mercè Boada, Miguel A Santos-Santos, Octavio Rodríguez-Gómez, Montserrat Alegret, Pilar Cañabate, Asunción Lafuente, Carla Abdelnour, Mar Buendía, Maria José de Dios, América Morera, Ángela Sanabria, Laura Campo, Agustín Ruiz, Lluís Tárraga
Alzheimer's disease (AD) research is at a critical time. The global society is increasingly aware of the frightening rate of growth of the human and financial burden caused by this condition and of the urgent need to halt its progression. Consequently, the scientific community holds great responsibility to quickly put in place and optimize the machinery necessary for testing new treatments or interventions. In this context demand for participants for AD research is at an all-time high. In this review, we will focus on a methodological factor that is increasingly recognized as a key factor that shapes trial populations and affects validity of results in clinical trials: patient engagement, recruitment, and retention...
2018: Journal of Alzheimer's Disease: JAD
Jeffrey Cummings, Aaron Ritter, Kate Zhong
Alzheimer's disease (AD) has no currently approved disease-modifying therapies (DMTs), and treatments to prevent, delay the onset, or slow the progression are urgently needed. A delay of 5 years if available by 2025 would decrease the total number of patients with AD by 50% in 2050. To meet the definition of DMT, an agent must produce an enduring change in the course of AD; clinical trials of DMTs have the goal of demonstrating this effect. AD drug discovery entails target identification followed by high throughput screening and lead optimization of drug-like compounds...
March 16, 2018: Journal of Alzheimer's Disease: JAD
Darius M Moshfeghi
PURPOSE OF REVIEW: This review highlights the common areas of medicolegal risk during retinopathy of prematurity (ROP) screening. RECENT FINDINGS: Most malpractice risk in ROP comes from systemic errors that ultimately result in failure to screen the patient in a timely fashion, resulting in failures to intervene and/or refer in a timely fashion. Currently, the emphasis is engaging the family members, the hospital staff, and clinic staff to pro-actively manage ROP patients and ensure that they are screened in a timely fashion...
March 20, 2018: Current Opinion in Ophthalmology
Shabnam Sadeghi Esfahlani, Tommy Thompson, Ali Davod Parsa, Ian Brown, Silvia Cirstea
This paper proposes the use of a non-immersive virtual reality rehabilitation system "ReHabgame" developed using Microsoft Kinect™ and the Thalmic™ Labs Myo gesture control armband. The ReHabgame was developed based on two third-person video games that provide a feasible possibility of assessing postural control and functional reach tests. It accurately quantifies specific postural control mechanisms including timed standing balance, functional reach tests using real-time anatomical landmark orientation, joint velocity, and acceleration while end trajectories were calculated using an inverse kinematics algorithm...
February 2018: Heliyon
Roberta L Woodgate, Melanie Zurba, Pauline Tennent
Plain English summary: The involvement of patients in health research has resulted in the development of more effective interventions and policies in healthcare that respond to the needs of healthcare users. This article examines how working with youth and their families as co-researchers in health research communities of practice (CoPs), rather than just as participants, can benefit all involved. Health research (CoPs) promote an environment in which co-researchers have the opportunity to do more than just participate in the data collection phase of the research process...
2018: Research Involvement and Engagement
Jessica Alber, Kelly McGarry, Richard B Noto, Peter J Snyder
Background: Recent genome-wide association screening (GWAS) studies have linked Alzheimer's disease (AD) neuropathology to gene networks that regulate immune function. Kan et al. recently reported that Arg1 (an anti-inflammatory gene that codes for arginase-1) is expressed in parts of the brain associated with amyloidosis prior to the onset of neuronal loss, suggesting that chronic brain arginine deprivation promotes AD-related neuropathology. They blocked arginine catabolism in their mouse AD model by administration of eflornithine (DFMO) to juvenile animals, effectively blocking the expression of AD-related amyloid pathology as the mice aged...
2018: Frontiers in Aging Neuroscience
Jennifer L Walton, Diane K Dunn, Nhi Y Haines, Ilana Heisler, Michael T Bigham, Teresa A Volsko
BACKGROUND: The American Academy of Pediatrics Section on Transport recommends the use of portable ventilators during the transport of patients with advanced airways. We sought to identify knowledge gaps and evaluate the effectiveness of a transport ventilator competency boot camp. METHODS: Electronic health records of children requiring ventilatory support during air and ground interfacility transport from January 1 through December 31, 2015, were reviewed to determine when manual ventilation was used in lieu of a portable ventilator, and simulations were constructed from commonly occurring scenarios...
April 2018: Respiratory Care
Yasmin van Kasteren, Jill Freyne, M Sazzad Hussain
BACKGROUND: The growth in patient-centered care delivery combined with the rising costs of health care have perhaps not unsurprisingly been matched by a proliferation of patient-centered technology. This paper takes a multistakeholder approach to explore how digital technology can support the cocreation of value between patients and their care teams in the delivery of total knee replacement (TKR) surgery, an increasingly common procedure to return mobility and relieve pain for people suffering from osteoarthritis...
March 20, 2018: Journal of Medical Internet Research
Angela Grocott, Wilfred McSherry
(1) Background: There is limited empirical knowledge concerning aspects of healthcare that contribute to a good patient experience from the patient's perspective and how patient feedback informs service development. (2) Aim: To examine the issues that influence the effectiveness of communication on patient satisfaction, experience and engagement, in an acute National Health Service (NHS) setting, through identification of the patient's requirements and expectations. (3) Method: Data was gathered from a large teaching hospital using a Friends and Family Test (FFT) and a communication specific survey...
March 20, 2018: Healthcare (Basel, Switzerland)
Sandy Oelschlegel, Kelsey Leonard Grabeel, Emily Tester, Robert E Heidel, Jennifer Russomanno
Patient engagement in health care decisions largely depends on a patient's health literacy and the health literacy attributes of the health care organization. Librarians have an established role in connecting patients with health information in the context of their care. However, librarians can play a larger role in helping to make changes in their organization's health literacy attributes. This article discusses one medical library's process of leading systematic assessment of their organization's health literacy attributes...
April 2018: Medical Reference Services Quarterly
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